Living with advanced cancer and an uncertain disease trajectory: an emerging patient population in palliative care?

BMJ Support Palliat Care 2015; vol/is 5/4, p 352-357
Elizabeth A Lobb, Judith Lacey, John Kearsley, Winston Liauw, Lesley White and Annmarie Hosie

Participants in this study represent an emerging cancer patient population who are receiving palliative therapies. Our study suggests that a flexible model of care is needed to support the needs of people who may still be receiving some form of chemotherapy and/or radiotherapy, and remain well. This model may need to take more of an intermittent approach, that is, as required for specific symptom management, rather than patients being linked continuously to a palliative care service for long periods of time.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Defining the palliative care patient: its challenges and implications for service delivery

BMJ Support Palliat Care 2015; vol/is 5/4, p 46-52

Helen Mitchell, Simon Noble, Ilora Finlay and Annmarie Nelson

Within the UK, general practitioners (GPs) are required to maintain a register of palliative patients under their care. We explored GPs' views of what defines a palliative care patient in the context of identifying clinical service needs.  Achieving health policy targets which require identification of palliative patients will continue to be a challenge until a workable and reliable definition of the term ‘palliative’ is agreed upon.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

BMJ Support Palliat Care 2015 December, vol/is 5/5, p 531-7
Dorry McLaughlin, Owen Barr, Sonja McIlfatrick and Roy McConkey

Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Prognostic factors of 30-day mortality after palliative procedures in patients with malignant pleural effusion

Annals of surgical oncology, Nov 2015, vol. 22, no. 12, p. 4083-4088 

Abrao, Fernando Conrado, de Abreu, Igor Renato Louro Bruno, Fogarolli, Mariana, Caxeiro, Giovanna, Bezerra, Camila Borges Saes, de Cerqueira Cesar, Fernanda Prado, Rocha, Poline Spitti, Younes, Riad Naim

The aim of this study was to identify predictors of 30-day mortality in patients with malignant pleural effusion (MPE) who need pleural palliative procedures. The authors identified four factors that are easily recognized in daily practice and can help select patients with low life expectancy, therefore preventing invasive procedures and hospitalizations for this subgroup of patients.

Internet-based exposure and behavioral activation for complicated grief and rumination: a randomized controlled trial

Behavior therapy, Nov 2015, vol. 46, no. 6, p. 729-748

Eisma, Maarten C, Boelen, Paul A, van den Bout, Jan, Stroebe, Wolfgang, Schut, Henk A W, Lancee, Jaap, Stroebe, Margaret S

This study examined the effectiveness and feasibility of therapist-guided internet-delivered exposure (EX) and behavioral activation (BA) for complicated grief and rumination. Results supported potential applicability of online exposure but not behavioral activation to decrease complicated grief and rumination. 

Fulltext available from Elsevier in Behavior Therapy

Palliative care in patients with ovarian cancer and bowel obstruction

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, Nov 2015, vol. 23, no. 11, p. 3157-3163

Daniele, Alberto, Ferrero, A, Fuso, L, Mineccia, M, Porcellana, V, Vassallo, D, Biglia, N, Menato, G

Malignant bowel obstruction (MBO) is usually a pre-terminal event in patients with ovarian cancer. The authors analyzed medical and surgical procedures, performance status, nutritional status, cachexia, and their prognostic value in this group of patients. Cachexia, low performance status, and poor nutritional status were significant predictors of worse survival after MBO, independent of the treatment. The authors conclude that surgery has to be considered in patients without serious contraindications; otherwise, a medical protocol, including antisecretory drugs, is the standard of care in frail patients. 

Symptom management and end-of-life care in amyotrophic lateral sclerosis

Neurologic clinics, Nov 2015, vol. 33, no. 4, p. 889-908

Jackson, Carlayne E, McVey, April L, Rudnicki, Stacy, Dimachkie, Mazen M, Barohn, Richard J

The number of available symptomatic treatments has markedly enhanced the care of patients with amyotrophic lateral sclerosis (ALS). Once thought to be untreatable, patients with ALS today clearly benefit from multidisciplinary care. Unfortunately, there are few randomized controlled trials of medications or interventions addressing symptom management. In this review, the authors provide the level of evidence, when available, for each intervention that is currently considered standard of care by consensus opinion. 

Fulltext available from Elsevier in Neurologic Clinics

Tools to assess pain or lack of comfort in dementia: a content analysis

Journal of pain and symptom management, Nov 2015, vol. 50, no. 5, p. 659-675

van der Steen, Jenny T, Sampson, Elizabeth L, Van den Block, Lieve, Lord, Kathryn, Vankova, Hana, Pautex, Sophie, Vandervoort, An, Radbruch, Lukas, Shvartzman, Pesach, Sacchi, Valentina, de Vet, Henrica C W, Van Den Noortgate, Nele J A.

The authors aim was to map and compare items in tools that assess pain and the broader notion of discomfort or comfort in people with severe dementia or at the end of life.

Fulltext available from Elsevier in Journal of Pain and Symptom Management

Available in print in Arthur Rank House Library, Brookfields Hospital

Palliative care of urologic patients at end of life

Clinics in geriatric medicine, Nov 2015, vol. 31, no. 4, p. 667-678

Sinclair, Christian T, Kalender-Rich, Jessica L, Griebling, Tomas L, Porter-Williamson, Karin

This article focuses on the issues facing patients with advanced and terminal urologic illness, from the framework of care planning based on defining patient-specific and family-specific goals of care, to palliative management strategies for common symptoms and syndromes that these patients and their families experience. It also discusses the management of common urologic issues that may arise in the course of care for all patients at the end of life, as well as the impact of these conditions on caregivers 

Fulltext available from Elsevier in Clinics in Geriatric Medicine

Draining malignant ascites at home with tunnelled catheters: complications and costs

European Journal of Palliative Care
2015 22(6) pp 266-273

Damian Mullan, Nabil Kibriya, Hadeel Hassan, Arun Jacob and Hans-Ulrich Laasch

Recurrent malignant ascites can be managed at home using tunnelled intraperitoneal catheters. The authors have conducted a study to determine the safety, efficacy and complications of tunnelled paracentesis performed at home, as well as the potential cost savings compared with conventional drainage in hospital.

Available in print in Arthur Rank House Library, Brookfields Hospital

Venting gastrostomy at home for symptomatic management of bowel obstruction in advanced/recurrent ovarian malignancy: a case series

Journal of Palliative Medicine, Aug 2015, vol. 18, no. 8, p. 722-728

DeEulis, Timothy G, Yennurajalingam, Sriram

In this case series, the authors describe supportive care outcomes in ovarian cancer patients with malignant bowel obstruction receiving the effects of VG in a community setting. Their results suggest that VG may be beneficial in controlling nausea and vomiting in ovarian cancer patients with MBO and that VG placement with concurrent evacuation of large-volume ascites was associated with minimal complications. 

Patient and caregiver opinions of motivational interviewing techniques in role-played palliative care conversations: a pilot study

Journal of Pain and Symptom Management, Jul 2015, vol. 50, no. 1, p. 91-98 

Pollak, Kathryn I, Jones, Jacqueline, Lum, Hillary D, De La Cruz, Scott, Felton, Susanne, Gill, Arvin, Kutner, Jean S

The aim of this pilot study was to describe how patients and caregivers perceived MI techniques in palliative care role-play encounters. Qualitative analyses revealed that participants independently identified the following helpful communication elements that are consistent with core MI techniques: reflection and validation of values, support of autonomy and flexibility, and open questions acting as catalysts for discussion. Participants rated the MI-trained physician slightly higher on the perceived empathy scale. The authors conclude that the use of MI techniques shows promise for improving palliative care discussions.

Fulltext available in Journal of Pain and Symptom Management

Available in print in Arthur Rank House Library, Brookfields Hospital

Spiritual care: which is the best assessment tool for palliative settings?

International journal of palliative nursing, Sep 2015, vol. 21, no. 9, p. 430-438

Blaber, Michael, Jone, June, Willis, Derek

This paper analyses the benefits and drawbacks of using spiritual history-taking tools, considering four of the most widely used tools-FICA, FAITH, SPIRITual and HOPE. The authors conclude that spiritual history-taking tools do have an important role in identifying the spiritual needs of patients at the end of life, with the 'HOPE' tool most comprehensively addressing the spirituality themes identified as important within the healthcare literature.

Fulltext available in International Journal of Palliative Nursing

Available in print in Arthur Rank House Library, Brookfields Hospital

Experiences of hospice inpatient nurses in supporting children before the death of a parent.

International journal of palliative nursing, Sep 2015, vol. 21, no. 9, p. 453-459

Clipsham, Laura, Islam, Zoebia, Faull, Christina

This study provides an insight into how nurses identify the support needs of children, the barriers and facilitators to providing support and the impact on the nurses of their involvement in supporting the children.  The authors conclude that formal training and readily available resources help nurses working with children.

Fulltext available in International Journal of Palliative Nursing

Available in pront in Arthur Rank House Library, Brookfields Hospital

Evidence-based guidelines for pressure ulcer management at the end of life

International journal of palliative nursing, May 2015, vol. 21, no. 5, p. 225-232

Langemo, Diane, Haesler, Emily, Naylor, Wayne, Tippett, Aletha, Young, Trudie

This article discusses patient and risk assessment, prevention and care for pressure ulcers for the palliative care patient and the recommendations given in the palliative care section of the Prevention and Treatment of Pressure Ulcers: Clinical Practice Guideline 

Fulltext  available International Journal of Palliative Nursing

Available in print in Arthur Rank House Library, Brookfields Hospital

Hospice nurses' views on single nurse administration of controlled drugs

International journal of palliative nursing, Jul 2015, vol. 21, no. 7, p. 319-327

Taylor, Vanessa, Middleton-Green, Laura, Carding, Sally, Perkins, Paul

The aim of this study was to explore the views and experiences of nurses who had implemented single nurse dispensing and administration of controlled drugs (SNAD). Overall the nurses felt that SNAD benefited patients and families because it minimised interruptions and enabled them to respond more quickly to requests from patients. However, concerns were raised about competence in drug calculations and the impact of inexperience or tiredness.

Fulltext available in International Journal of Palliative Nursing

Available in print in Arthur Rank House Library, Brookfields Hospital

The role of airflow for the relief of chronic refractory breathlessness

Current Opinion in Supportive and Palliative Care, Sep 2015, vol. 9, no. 3, p. 206-211

Swan, Flavia, Booth, Sara

The authors conclude that there is sufficient review evidence available to suggest that airflow from the hand-held fan or medical air can provide clinically relevant and discernible relief of chronic refractory breathlessness at rest in patients with advanced diseases. Emerging evidence indicates that airflow from the hand-held fan may also have an important role with exertion-induced breathlessness.

Fulltext available in Current Opinion in Supportive and Palliative Care

NICE issues draft guideline on end of life care

July 2015

This guideline applies to all adults who are potentially entering the last days of their lives in any setting that is covered by NHS services.  It covers recognising dying, communication and shared decision-making and only the clinical aspects of symptom management.

The draft guideline is open for comments until Wednesday 9 September 2015.

You can read the consultation documents here

Social media and palliative medicine: a retrospective 2-year analysis of global Twitter data to evaluate the use of technology to communicate about issues at the end of life

BMJ supportive & palliative care, June 2015  5(2):207-12
Nwosu AC;  Debattista M;  Rooney C;  Mason S.

The scope and breadth of the use of Twitter to discuss end-of-life care has not previously been reported. The authors' aim was to determine the frequency, sentiment and trend of Twitter 'tweets' containing palliative care-related identifiers (hashtags) and/or phrases sent by users over a 2-year period.  They found that a lot of discussion about palliative care is taking place on Twitter, and the majority of this is positive. Social media presents a novel opportunity for engagement and ongoing dialogue with public and professional groups. 

• Fulltext available in BMJ Supportive and Palliative Care
• • Available in print in Arthur Rank House Library, Brookfields Hospital

Is the use of negative pressure wound therapy for a malignant wound legitimate in a palliative context? "The concept of NPWT ad vitam": a case series

Palliative medicine, May 2015, vol. 29, no. 5, p. 470-473 

Riot, Samuel, de Bonnecaze, Guillaume, Garrido, Ignacio, Ferron, Gwenaël, Grolleau, Jean-Louis, Chaput, Benoit

The use of negative pressure wound therapy is usually not recommended for the management of malignant wounds that are often malodorous, highly exuding, and painful.  It is, however, an effective procedure for maintaining a good quality of life in certain palliative situations.  The authors report their experiences with five patients for whom manufacturers and health authorities contraindicated the use of negative pressure wound therapy because of its potential to encourage tumor growth, although it was considered to be beneficial for all of these patients.

Fulltext available in Palliative Medicine

Available in print in Arthur Rank House Library, Brookfields Hospital

Outcomes of lung transplant candidates referred for co-management by palliative care: a retrospective case series

Palliative Medicine, May 2015, vol. 29, no. 5, p. 429-435

Colman, Rebecca, Singer, Lianne G, Barua, Reeta, Downar, James

Lung transplant candidates are rarely referred for palliative care consultation until they are deemed ineligible for transplant.  In this article, the authors review the characteristics, interventions, and outcomes of lung transplant candidates referred for co-management by palliative care, to determine whether they safely received opioids and went on to transplantation.  They conclude that palliative care and opioids in particular can be safely provided without compromising eligibility for transplantation. 

Fulltext available in Palliative Medicine

Available in print in Arthur Rank House Library, Brookfields Hospital

 

Fixed-dose subcutaneous methylnaltrexone in patients with advanced illness and opioid-induced constipation: results of a randomized, placebo-controlled study and open-label extension

Journal of palliative medicine, Jul 2015, vol. 18, no. 7, p. 593-600 

Bull, Janet, Wellman, Charles V, Israel, Robert J, Barrett, Andrew C, Paterson, Craig, Forbes, William P

The study objective was to assess safety and efficacy of fixed-dose MNTX in two phase 4 trials. The authors report that fixed-dose MNTX administered in the RCT and in a follow-up open label extension study demonstrated robust efficacy and was well tolerated in treating OIC in patients with advanced illness.

Development of the Carers' Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study

BMC palliative care, Jan 2015, vol. 14, p. 22

Knighting, Katherine, O'Brien, Mary R, Roe, Brenda, Gandy, Rob, Lloyd-Williams, Mari, Nolan, Mike, Jack, Barbara A

The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff to help avoid crisis situations for the carer and avoidable hospital admissions.  The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer.

Fulltext available in BMC Palliative Care

 

: 'I want to feel at home': establishing what aspects of environmental design are important to people with dementia nearing the end of life

BMC palliative care, Jan 2015, vol. 14, p. 26

Fleming, Richard, Kelly, Fiona, Stillfried, Gillian

Using a combination of focus groups and a Delphi survey, this study explored the views of people with dementia, family carers and professionals on what aspects of the physical environment would be important to support a good quality of life to the very end.

fulltext available BMC Palliative Care

Existential concerns about death: a qualitative study of dying patients in a Danish hospice

American Journal of Hospice & Palliative Medicine, June 2015  32(4):427-36

Moestrup L;  Hansen HP.

Research suggests that addressing dying patients' existential concerns can improve their quality of life. Here, the authors aimed to illuminate dying patients' existential concerns about the impending death through a descriptive analysis of semi-structured interviews with 17 patients in Danish hospices. The main findings demonstrated how the patients faced the imminent death without being anxious of death but sorrowful about leaving life.

Symptom management of bone metastasis at end of life

Journal of Hospice and Palliative Nursing, Jun 2015, vol. 17, no. 3, p. 183-186

Coyne, Paul Ensom

Through the use of a case narrative, this article demonstrates the complexity of palliative care as it relates to the pain management of bone metastasis at end of life from both the pharmacological and psychosocial perspectives. Treatment interventions for pain in each of these domains is explored, illustrating that metastatic bone pain at end of life is a multifaceted experience that requires a multimodal approach to care.

Barriers to research in palliative care: A systematic literature review

Progress in Palliative Care, 01 April 2015, vol./is. 23/2(75-84)

Blum, David, Inauen, Roman, Binswanger, Jacqueline, Strasser, Florian

The most often mentioned barriers to palliative care research are ethical concerns of performing research in a vulnerable population and issues of trial conduct due to difficulties obtaining informed consent or high attrition rates.  Possible strategies to overcome the barriers include international collaborative efforts and improving study designs to tailor them specifically to the PC population.

Available in print in Arthur Rank House Library, Brookfields Hospital

Ethics in palliative care

Progress in Palliative Care, 01 June 2015, vol./is. 23/3

This is a special issue exploring ethical issues.  It includes the following:

• Moral luck and the question of autonomy, choice and control in end of life decision making
• Decision-making capacity at the end of life
• Ethical dilemmas of surrogate decision making
• When mediation fails: identifying and working with inappropriate surrogate decision makers
• Palliative sedation: controversies and challenges
• CPR and hospice: incompatible goals, irreconcilable differences

Available in print in Arthur Rank House library, Brookfields Hospital

The Medicalization of Bereavement: (Ab)normal Grief in the DSM-5

Death Studies, 01 July 2015, vol./is. 39/6(347-352)

Bandini, Julia

This article first considers the removal of the bereavement exclusion from the criteria for the diagnosis of major depression DSM-5.  It then examines the consequences of this medicalization of grief, including overdiagnosis and overtreatment, a potential expanded market for pharmaceutical companies, and the loss of traditional and cultural methods of adapting to the loss of a loved one.

Coping flexibility, forward focus and trauma focus in older widows and widowers

Bereavement Care, 01 April 2015, vol./is. 34/1(17-23)

Knowles, Lindsey M, O'Connor, Mary-Frances

The primary aim of the present study was to assess whether trauma focus and forward focus coping strategies, and using strategies from both flexibly, would predict grief severity. Results showed that greater forward focus and coping flexibility predicted lower grief severity, and also predicted lower yearning, loneliness, and perceived stress. 

Available in print in Arthur Rank House Library, Brookfields Hospital 

Palliative care outcome measures resource pack launched

May 2015

The Cicely Saunders Institute and Hospice UK have joined forces to launch a new Palliative Care Outcome Measures Resource Pack. “Outcome measures are essential if hospices are to better understand – and be able to demonstrate to others – the positive difference they make for patients and families.” The packs are intended to help hospices and other palliative care teams learn more about outcome measures, and start to introduce a shared set of outcome measures into clinical practice.

Follow this link for the web article

New Macmillan toolkit for health and social care staff on discussing care plans

A new resource designed to help healthcare professionals discuss future care plans with patients, has been released by Macmillan Cancer Support.

The toolkit is aimed at generalists caring for people with progressive illnesses and those reaching the end stage of their lives. It covers a range of topics, and includes video clips and web links to assist professionals with their learning.

New free online training resource on Advance Care Planning

A new, free training resource is available to support healthcare professionals, carers, families and patients to prepare for the end of life by making advance care plans.

The training, which consists of 10 online modules, was produced by Kent Community Health NHS Foundation Trust and Canterbury Christ Church University and hospices in Kent.

'The Road Ahead': NCPC launches official strategy for 2015-18

NCPC has published its official strategy for 2015-18.

The new strategy has been agreed by NCPC's Board of Trustees and affirms its vision for palliative and end of life care, demonstrates how it can play an important role in shaping the future, and sets out the areas in which it will work to achieve these goals.

In the three years to March 2018 The Road Ahead will shape all NCPC's activities, including its work leading the Dying Matters Coalition.

The road ahead - National Council for Palliative Care Strategy 2015-2018

Published May 2015

The new strategy has been agreed by the NCPC's Board of Trustees and affirms their vision for palliative and end of life care over the next three years, demonstrates the role they can play in shaping the future and sets out the areas in which they will work to achieve these goals.

The strategy identifies four priority areas of work:

• Changing attitudes
• Changing behaviour
• Improving care and support
• Improving evidence and intelligence

Follow this link for the strategy

Tax help: a guide to taxation at bereavement (booklet)

Produced by Tax Help for Older People, this booklet is a checklist and reminder about things to do about tax at bereavement.  It is aimed at those where the personal representative of the person who has died is the surviving spouse or close family member.  Rather than being an exhaustive account of the entire tax system, it provides sufficient guidance on the common issues that need to be addressed when someone dies.

Download a copy of the guide here

Advance care planning in a UK hospice: the experiences of trained volunteers

European Journal of Palliative Care, May/June 2015, 22(3)144-51
Penny Jones, Kate Heaps, Carla Rattigan and Di Marks-Maran

In 2013, Greenwich & Bexley Community Hospice launched an ACP project to enable hard-to-reach people with life-limiting illness in the London borough of Greenwich, and their carers, to develop an advance care plan. The hospice aimed to recruit and train up to 45 volunteers to support a minimum of 225 people with life-limiting illness. An evaluation of the volunteers’ experiences was commissioned after the project’s first year of operation. This article discusses the development of the project and the findings of the evaluation, starting with a
brief literature review of ACP.

Available in print in Arthur Rank House Library, Brookfields Hospital

End-of-life care for cystic fibrosis patients

European Journal of Palliative Care, 2015, 22(2)74-77; 22(3)136-140
Julia Nightingale and Irfan Shafiq

From lung transplantation to advance care planning, from symptom control to place of death, Julia Nightingale and Irfan Shafiq review the key issues arising for respiratory physicians when caring for patients suffering from cystic fibrosis. This paper is published in two parts

Available in print in Arthur Rank House Library, Brookfields Hospital

A palliative care outreach programme for patients with respiratory disease

European Journal of Palliative Care, May/June 2015, 22 (3) 126-9

Lisa Makey and Andrew Hiskett

Keech Hospice Care initiated an outreach programme aimed at helping patients with chronic lung disease to access palliative care. Lisa Makey and Andrew Hiskett show how it has improved patients’ quality of life and reduced their fear of engaging with hospices. Although this programme focused on respiratory disease, the results indicate that the management of any non-malignant condition could be optimised by the introduction of similar programmes.

Available in print in Arthur Rank House Library, Brookfields Hospital

Detecting pain or distress in people with dementia: an appraisal of two strategies

European Journal of Palliative Care, May/June 2015, 22 (3) 110-113

Jenny T van der Steen, Claud Regnard, Ladislav Volicer, Nele J A Van den Noortgate and Elizabeth L Sampson

What is the best approach to recognise pain or distress in people with dementia who cannot express themselves verbally? Jenny T van der Steen, et al have critically appraised two assessment tools: the pain tool PAINAD and the distress documentation tool DisDAT.

Available in print in Arthur Rank House Library, Brookfields Hospital